Sperm Banks and Egg Clinics Take Note

I just received the following email today. If anyone is still questioning the importance of comprehensive medical and genetic testing of donors, and the urgency in regards to being able to update and share medical information amongst families…read on. When will the reproductive medicine industry get on board, and realize that deliberately keeping genetic relatives from each other can be harmful to families?

“I am the parent of two children who were born with a sperm donor.  They are both in their early 30’s.  In the past 6 weeks we have discovered that they were born with a bad gene and they have a rare heart disease.   With this gene,  a person just drops dead with no warning.   In checking my grandchildren, two of them, under the age of 10, carry the gene.  My oldest child and the youngest grandchild have had surgery.   My younger child is going to have a baby in December and that grandchild will have a 50 percent chance of getting the disease.  Still testing etc to see what that treatment will be.  I have had DNA testing done and I do not carry the gene.  Doctors said it had to come from the donor.

My question to you is what should we do to notify others about this issue.  We just can not sit back and not try to notify others.  I have been in contact with the doctor who did the procedure.  The donor was a medical student or an intern.  It was not like it is today.

To say the least, we are beside ourselves.  So much has happened and we are just trying to do what is needed and we all feel that we should reach out.

Thanking you in advance, for any advice you can give us.”

84% of our surveyed sperm donors said that they had never been contacted by their clinic/sperm bank for a medical update, while 23% of them said that they or a close family member had a medical/genetic issue that would be important to share with families.

96% of our surveyed egg donors said that they had never been contacted by their clinic for a medical update, while 31% of them said that they or a close family member had a medical/genetic issue that would be important to share with families.

 

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